Friday, May 26, 2017

CF Awareness Month- In Memorium

This has to be the hardest topic of them all. I have lost some cysters over the years and it so heartbreaking to lose someone to your same disease and at such a young age. I realized recently that at 33 I have outlived most of my closest cysters. At 33!! I am going to speak for all 33 year olds and say we are way too young to be outliving our friends!

When I started blogging I met a friend through my blog comments. She was about my age, worked in a school, and was married and had lung function just a little higher than mine. She found my blog because she wanted to start a family. We hit it off and became Facebook friends and stayed in touch via e-mail.

What happened over the next few years is something I will never understand and I will never live without feeling some guilt as to how life treated us so differently. I had a baby, she was having trouble conceiving. After a few years of trying she decided to try for surrogacy for multiple reasons. I was ecstatic for her because she would finally fulfill her dreams of motherhood.

Then by some weird twist of fate we both started to decline. We both started losing lung function and having problems getting a grip on CF. We slipped down together, and found comfort in clinging to hope with one another. We found comfort in having a friend that could understand how this horrendous disease can pull the carpet out from under you and you can fall at such a dizzying speed that nothing seems to ever make sense.

And then we watched our numbers fall to the 40s, 30s, 20s, both desperately trying anything to get our numbers back, both of us working our asses off to do anything and everything our doctors asked and then more. We made a bet at who would get back to 50% again and we teased one another about who would win. We talked about the upcoming medications in the pipeline and how close Orkambi was. We told one another to hang on until Orkambi become available. And then we both were going to the hospital again, but my room wasn't ready and I kept getting delayed, for days. Finally the phone rang to say a room was ready and she was the first person I told. But she didn't respond.

She would never respond again.

I still don't know why I was given a baby and she was not. She deserved one just as much as I did.

I still don't know why either of us had to decline so rapidly.

I still don't why I was given a second chance and she did not. She deserved it just as much as I did.

I still don't know why I was able to try Orkambi and she was gone before ever getting a chance.

I still cry when I think about her and how things ended up.

I still call on her for strength when my CF gets too hard because I know wherever she is, she understands.